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Stupid and Useless

  • Posted on December 4, 2014 at 10:00 AM

Those are loaded words when you’re part of a community of people with disabilities. Far too many people have been derided as stupid and useless for far too long. Yet those words struck a chord with me.

“Stupid useless pain is much harder to bare than pain with purpose.” –Dr. David Schnarch

I read these words in a book about marital relations. Of course, the book in question addresses far more serious situations than I am concerned with, but I’m finding the basic tools are applicable. More to the point, the pain I thought of when I read these words did not involve (at least, not directly) my husband Mark.

I’m not prone to hyperbole, so believe me when I say the last two months have been hell for me. I’ve had meds messing with my mind. I’ve had so many troubles and complications that I’ve given up hope, gotten it back, given it up, and gotten it back more times than I can count. I’ve been sick for over a month and got so used to feeling weak and dulled that I didn’t realize how far I’d slipped until I started to climb back up to my strength. I’ve been angry at God. I’ve coughed until my lungs hurt and then coughed some more. And, no matter how much I try to get back on track, I keep slipping back into a cycle of decline-and-recovery. I’m still not even with myself.

Most of this time, I’ve felt like everything I’ve been going through was stupid and useless. It’s been painful—physically, mentally, emotionally, and spiritually painful—and it was useless and stupid and ENOUGH IS ENOUGH ALREADY!!!

Like most human beings, I seek relief when I’m in pain; yet, I’ve gone through some incredibly painful experiences and I’ve bore them much better because I’ve understood their purpose. I’ve born these last two months quite poorly. I’ve done things I despise, like yelling at my child for being uncooperative because I just couldn’t handle one more thing. I haven’t done things that I should, like finishing all the work I promised to my clients months ago.

As an adult, when Mark moved to a new place, he’d walk around until he got thoroughly lost in order to learn more about the place he chose to live. On the other hand, we took a trip as a family and I ended up missing an important turn. Instead of going down I-35, we were going down I-90. We got so lost and mixed up trying to cut across between the two that Mark literally used the sky to navigate for me. I hate being lost. Mark takes it in stride and he finds the way forward.

These last two months I’ve been lost and I hated every moment of being lost. I hated being weak. I hated being tired. I hated being in pain. I hated my complete inability to turn things around. I was fighting so hard against the things I hated and I wasn’t getting anywhere. It was stupid useless pain and it was eating me alive.

Then, I stopped fighting. This time it wasn’t a matter of giving up; it was more a matter of looking around and looking up. Two things occurred to me. First, I knew that I had finally completed my memoir and that, whatever happens, it will be published. Second, I saw that in trying to start from scratch I’d begun writing again.

Granted, my business is a writing business. I’m always writing something. But everything I’d been writing since I obtained my graduate degree in writing was written with a specific purpose in mind. Whether it’s for a client or for myself, it’s all been driven by a purpose, by an objective, by a goal. Everything I’ve written has been practical.

I am not, naturally, a practical person. I’m a dreamer. In living my dreams, I’ve pursued practical purposes that, together, are supposed to realize my dreams. But practicality doesn’t come naturally to me. Dreaming does. So, when it came time to replenish my creative well, I started writing the passionate ideas that came to me—without a predefined purpose. And it was liberating.

Now, practically speaking, I’d stopped writing in order to better use my time in my writing business. I suspect that there was no other way to get me writing again than to knock me so thoroughly down that I had to go back to my roots as a writer just to stand myself back up. You see, decades ago when I started writing, it wasn’t with purpose—just passion. I loved to write. Writing excited me. It thrilled me. Cultivating my talent and turning it into a business was something I was proud of, something I loved.

Then, once I’d actually got my business up and running, there came the pressure and the consequences of that pressure and the consequences of those consequences. I became driven. I was still inspired and I was still passionate, but I wasn’t using that passion or that inspiration, not to its fullest. I was working towards a purpose. Everything else fell to the wayside, including the love I had for what I was doing.

So, while I’m still recovering, I’m recovering with a purpose. I’m recovering my faith. I’m recovering my inspiration. I’m recovering my work ethic. And, yes, I’m recovering my health, too. My life is imbalanced, but I’m getting better now that I have a purpose I can really live with, despite the pain. And I’m about one-fourth of the way through the first draft of a novel that I’ve been trying not to write for at least six months. Now, that was stupid and useless, wasted effort. And I realized it by realizing, once again, that pain is necessary for growth and renewal.

Try, Try Again

  • Posted on November 24, 2014 at 10:00 AM

I’m on a new prescription to fight the illness that has been lingering far too long. According to the doctor, it’s still just sinusitis and bronchitis. I haven’t developed any tertiary infections (bronchitis is the secondary one), including and especially pneumonia. So, I’ve got that going for me. The doctor also changed the antibiotic and extended the length of time I’m taking it. So, while I’m not better yet, chances are good that I will be by the time this medicine is through. Meanwhile, I am coughing a bit less and getting a bit stronger. So, I am getting back to work.

Working has been a problem for several weeks now. My work is very cerebral in nature, which means I have to reach a minimal level of concentration before I can produce quality work. The length of time I’ve been away from my work, along with other complicating factors, has also made it necessary for me to start from zero.

Basically, along with the concentration (which is improving) and the knowledge (which I’ve retained), my work depends on my confidence (which was depleted) and my skill (which has become rusty). A final ingredient, which is a bit more mysterious, is the creativity factor.

Creative writers—novelists and memoirists, for example—often speak of “the muse,” which is a nod to Greek mythology. Personally, I see creativity as being less dependent on external forces (like a demi-godish being whispering in your ear) and more dependent on internal forces, like a bubbling “pot” of a variety of inputs and a willingness to put different things together until you create something fantastically new. Though, I believe there are internal and external forces that interplay and interlay amongst each other, which is what makes creativity such a mystery.

For me, the biggest factor is that my creativity is most robust when it’s used abundantly. The more I use my creativity the more creativity I can bring to bear on a new project. Concentration tends to work in the reverse: the more I concentrate the less capacity for concentration during a given day. This creates something of an X-factor, where the one is rising, the other is lowering, and the optimal time to perform the hardest work is when they cross each other. Finding my X-factor is a matter of trial and error, because it is dependent on factors that change from day to day. If I spend long periods of time not working, then I get out of practice. My moments of optimal work time become shorter and finding them becomes harder.

As my strength has improved, I’ve devoted time to getting in the practice I need. So far, my X-factor has eluded me; but, the last few days, I’ve gotten pretty close. This is a sign that I’m ready to get back to producing end-product work for clients.

It’s about time!

What’s Out There?

  • Posted on July 30, 2014 at 10:00 AM

Parents worry a lot about what it will be like when our children go out there, out into the world. For some, worries revolve around the violence and crime that permeates our world. For no reason, for no reason at all, a car could slam into a child and take that child from this world. Does it really matter if the road was slippery due to rain or snow? Does it really matter if the driver was tired or drunk? Does it really matter if the driver was in a get-away-car or going for a joy ride? What matters is that the child is gone and there’s no reason for it.

For some, worries revolve around society and the judgments society makes about individuals. For no reason, for no reason at all, a child can be harassed or bullied or killed. Does it really matter if the child is gay or straight? Does it matter if the child is typically developing or developmentally delayed? Does it matter if the child is autistic or crippled or seemingly normal? Does it matter if the child is black or white? What matters is that the child is hurt, scarred, or gone and there’s no reason for it.

For some, worries revolve around the child. For no reason, for no reason at all, a child can be sick or dying. Does it really matter if it’s leukemia or AIDS? Does it really matter if it’s epilepsy or traumatic brain injury? Does it matter if the disease is rare or common? Does it matter if it’s acquired or if the child was simply born that way? Does it matter if the life expectancy is a month or a year? What matters is that a child is hurting, growing weaker, slipping away, and then gone and there’s no reason for it.

I look out into the world and sometimes what I see terrifies me. I don’t want to go out there. I don’t want my children to go out there. And I honestly just don’t get it. There’s enough pain and suffering in this world that we can do absolutely nothing about! Why in the world would anyone want to bring more pain and suffering onto others by committing crimes, acts of violence, or acts of negligence?

I realize, logically, that these people aren’t thinking about other people. The man who drinks himself stupid and then gets behind the wheel isn’t thinking about the people he might hit along the way. He’s drowning some sorrow in booze and then thinking, if you can call it that, about getting home. The man who holds up the convenience store isn’t thinking about the people he’s robbing or the people he might hurt or kill in the process. He’s thinking about what he wants and the quickest way to get it. The kid who bullies another isn’t thinking about that other kid. He’s thinking about his own pain, his own inadequacies, his own need to feel better, superior, cooler, or whatever.

I think about other people. I think about my family, my friends, my neighbors, and the strangers that are around me. I look before I backup. I drive carefully and soberly. I don’t drive when I’m impaired. I’m cautious, careful, hardworking, and loving. In a moment, my world could be changed by someone who isn’t like me. In a moment, my child or my husband or I could be gone from this world. And so I worry. I try not to think about it, but I worry nonetheless.

Sometimes I wonder why parents like me, parents of children with autism, try so hard to get their children out there, out into the world. Sometimes I think we’d all be safer if we just stayed home whenever possible. Go to work, go to the store, go out to eat upon occasion, but stay home and stay safe as much as possible. But even that kind of safety is an illusion. What’s out there can come in here without warning.

Still Progress

  • Posted on July 16, 2014 at 10:00 AM

Two steps forward, one step back. It’s not the kind of progress I want, but it’s still progress.

Willy got sick. He felt unwell for less than 24 hours. I got sick, too. I felt unwell for three days. Neither is particularly unusual. Willy has a robust immune system. I don’t. Willy inherited his from his father.

So far, neither Ben nor Alex has shown any signs of illness, though I suspect my mom might have it. Willy had gone over to her house to play, ended up getting sick, and then spent the night. Still, I was the one who came down with it second, after Willy. If my mom got it, she waited a few days before showing signs of it.

I may have been exposed earlier than her, but neither Mark nor the younger boys are showing any signs of it. It comes down to my physical weakness. It was a rather mild illness, as far as those things go, consisting of headache, a slight fever, and nausea. The weakness lingered for me, forcing me to sleep even though I was too comfortable to sleep well.

I had just gotten back on track to where I wanted to be, then I got sick—and I was forced to sleep—and got shoved off track again. My battle with my to-do lists is so tenuous it doesn’t take much. Losing a single day sets me off track. Losing three… *sigh*

The only thing that’s saving me right now is that I wasn’t going at my full pace. I wasn’t even trying to be full-time. So, in that sense, it should be easier to catch up. Of course, the reason I wasn’t going full-time was because I don’t have the strength for it, so I doubt I have the strength to “catch up” either.

Two steps forward, one step back. It’s still progress, but that doesn’t mean I have to like it.

Smelling Sick

  • Posted on March 26, 2014 at 10:00 AM

Parenting brings about some pretty strange super powers. One of mine is the ability to smell when my children are getting sick. I don’t know what it is, maybe a pheromone or something, but when the boys are coming down with something they start producing this faint odor. It’s not unpleasant and it’s not strong, but it certainly catches my attention.

I don’t make my decisions about keeping the boys home from school due to illness based on this smell alone, but the smell does give me a warning to pay closer attention to the signs that the boys might be getting sick. Since the boys don’t necessarily tell us when they’re sick, this can make the difference between keeping the boys home in comfort and getting a call to come pick them up from school.

Alex was grumpy this weekend. Several times I saw him get up, start to do something, and then seem to give up or forget and go back to what he was doing before, which required less energy. I do that all the time, usually because I have too much on a mind disengaged by too little sleep. Alex sleeps pretty well and usually is more focused, in his own way, than that. It was a sign that he was extra tired. He also lashed out more readily at others, especially Ben. He cuddled more and I found him laying down several times. I thought it was odd, but I wasn’t too worried.

Sunday evening, after Mark told me that Willy had thrown up (and then lied about it); then, I smelled the smell on Alex. Together with the smell, I had enough information from the behavioral change to consider him sick despite the lack of fever or vomiting. They both stayed home Monday. Alex got some extra rest and an extra quiet (Ben-free) day and seemed to recuperate by the end of the day. Willy recuperated a bit faster, but still needed the extra rest.

Now, they’re both back at school. I just hope Ben doesn’t get it, too!

Under the Weather

  • Posted on October 7, 2013 at 10:00 AM

The days are turning colder here in Wisconsin. The storms are passing through. Often the clouds rain down their cold on us. Even when they don’t, I feel the pressure in my head. Combined with a sinus infection, the extra pressure has certainly gotten me down.

So begins autumn in Wisconsin. I keep scrambling to keep up with my workload, but my body demands rest. The effort to keep myself on a schedule consistent with the day/night cycle is too much. I need to work when I can and sleep when I must, which seems all too often.

I’m hoping this dose of antibiotics, combined with my body’s insistence on rest, will help me recover. The best I can say is at least I didn’t wait until it had turned into bronchitis. The doctor was pleasantly surprised to find the infection hadn’t settled in my chest. I didn’t bother to tell him that I usually wait several more weeks before I bother coming in.

First Down

  • Posted on September 23, 2013 at 10:00 AM

It’s always a guess who’s going to get sick first and how soon it will happen and how quickly it will spread. Alex was our first one down and it was a lingerer. He was sent home last Tuesday because he’d thrown up in school. Our Autism Waiver case manager was coming that day and she was just as skeptical as my husband and I about the legitimacy of this illness until I showed up with Alex. He was obviously lethargic and had been since before he threw up.

He only threw up that once, but for the next few days he was slow to eat, even slower to drink, and very warm, though not dangerously so. He was fighting it off, but it took all week for him to really get his energy back.

Alex is going back to school today. I slept more to keep from being knocked down with it. It took away from my productivity during a busier-than-usual week, but it had to be done. Mark got away with a “tickle” in his throat for a day. Ben was down for a while, missed a day of school, but rebounded before the day was half over. Willy was “doing great” all the while.

It’s always a little heartbreaking to see how fragile Alex’s immune system can be. It’s awful that the most difficult one of us to help is the one who bears the brunt of whatever’s going around.

Paying the Cost

  • Posted on September 10, 2012 at 8:00 AM

This summer has taken a toll on me and my family. Summers are usually a time of more pronounced need—because the boys are at home more often if for no other reason. But this summer has been full of the unexpected. I’ve been scrambling to keep up, getting further behind in the process.

Regular family obligations. An unexpected diagnosis. Regular business obligations. Coursework. A new book contract. A pronounced need to further develop non-writing skills that support my writing. It’s all taken its toll. Simply put, I’m tired.

It manifested itself as an infection that spread from a tooth to my face. After weeks of pushing myself, my body finally pushed back. So, for over a week now, I’ve been forced to rest so that my body can heal. Slowly, the swelling has gone down and the pain has gone away. I’m almost recovered—though I’ll need to see a dentist to make sure it doesn’t happen again.

It’s times like these that I like of all my well-meaning friends, who are also parents of children with special needs, who have talked about the importance of self-care. It’s not that I don’t respect their wisdom—I certainly do!—but I haven’t found a way to put it into practice, at least not consistently. When everything is going so fast and there are always more things to do than can reasonably get done, how do you pull back and set limits? I honestly don’t know. But at times like these it becomes increasingly clear that I need to figure it out!

That seems to be the next thing for me to learn.

A Voiceless Mystery

  • Posted on November 30, 2011 at 8:00 AM

At a time like this, I can’t help but think about the autistic adults who write about how they’re silenced by the community at large, and by the community of parents of children with autism. I think about how they type their complaints and post them online. I think about how they host protests and shout at the marching parents who demand a cure. I think about these autistic adults, and I have to remind myself they’re not wrong. Their needs and their complaints are real. They’re very real and they are very important.

But at a time like this, it’s hard to empathize. Here I am typing away my own complaints and posting them online. It seems, at the moment, that we’re on equal ground. Whereas, the child I shelter is at an extreme disadvantage.

Monday morning I noticed that Alex was limping. It was only a slight limp, so I assumed he wasn’t wearing his shoes properly. He’s a toe-walker—walking as if he’s wearing high-heels even when he’s barefoot or wearing tennis shoes—so he frequently scrunches his toes as deeply into the shoes as they’ll go, with the heel flapping awkwardly behind his foot. I didn’t think much of it.

That afternoon, I got a call from the school nurse. Alex was limping at school. She examined his feet and ankles for swelling, but didn’t find anything wrong. He was calm—a bit out of sorts due to a cold. He came home and continued to limp. I didn’t know what to think, but it didn’t seem to bother him much and it didn’t seem to be getting any worse. I examined his feet, his knees, and his legs for an explanation. I saw nothing worth noting.

Tuesday morning he was still limping. I checked his feet, his legs and his knees again. Nothing. I sent him to school, and he was still limping. They also noticed some mysterious signs—lack of focus, apparent lack of recognition—and worried something else might be wrong. (I still think he’s just feeling a bit off from his cold, because his mood seems fine at home. He’s a bit cranky, but we’ve seen no signs of mysterious blinking or unfocused eyes. But his limping was definitely worse.) So, I took him home, took off his shoes and socks, and examined his feet. One side seemed just a slight bit swollen, but only in comparison to the other foot. His feet are so thin, so bony, and so muscular that a little bit of swelling fleshed out his one foot so it almost looked normal. It was only in comparison that the swelling seems unnatural.

Then, I looked all over the foot that was swollen. On the bottom inner sole of his foot, in a place that’s difficult to see because of the way the shape of his foot has been distorted by his toe-walking, there is a rather large, purplish bruise. I can’t help but feel guilty, since it seems unlikely that the bruise just appeared. We must have missed it.

The place was tender, of course, and is almost certainly the cause of the limping. Still, despite the limp, it’s not slowing Alex down much. He still jumps, walks and plays around. He still resists icing it or any other form of treatment available to us.

I can’t help but think about the ways Willy or even Ben ensures they communicate their discomforts, pains and injuries. I can’t help but think of all those who are “silenced” and yet are able to articulate their hurts. I can’t help but sympathize with the parents who, when confronted with minor mysteries regarding their nonverbal children, gravitate towards the terrible “what ifs,” because I do, too. What if Alex was troubled by something serious, even deadly? How would Alex communicate it? Would we notice the signs in time?

I don’t support the ways that these parents lash out. From angry words to ridiculous claims, they devalue and dehumanize others. I can’t support that. But I can understand the fear that drives them. I share in their frustration, their fear, and their desire to “unlock” their child.

Autism didn’t steal Alex. He’s not trapped behind a wall of autism. I will never support metaphors like this to describe Alex’s experience of the world. I cherish the ways he communicates who he is to those who are willing to listen. I grieve that so many aren’t willing to listen. But how I wish, oh how I wish, that Alex could say, “Mommy, my foot hurts. No, it’s this one, down here. See!”

Giving room for adult autists to speak and to write is worth fighting for. But those words, those revealing words that Alex just can’t say…they’re worth fighting for, too.

Almost Okay

  • Posted on September 20, 2010 at 12:29 PM

Some things in life take on a feeling of regularity, despite their seeming abnormality.  For me, depression is one of those things.  As the clock strikes midnight on January 1st each and every year, I know I will experience four or five bouts of depression in the coming twelve months.  As abnormal as this may or may not be in the grand scheme of human living, it is normal for me. 

It is expected.  Knowing that it is expected makes it slightly, but only slightly, more endurable.

Also expected is the journey of depression itself.  It starts with resistance.  “I won’t let it happen again.”  “I’m going to power through and I’ll be fine.”  Or maybe even denial.  “I’m not heading into a depressive episode.”  “I’m not slowing down.  I’m not losing track of my own thoughts.”  “I am motivated.  I’m still working!”

Then, I reach the point where denial is no longer possible.  I’m stopped.  Like a sudden halt in the stampede of life, I’m thrown from the saddle and I find myself sitting in the dust—stunned.  Or, more accurately, I find myself sleeping for ten or twelve hours—when I usually subsist on six hours a day.  I find myself watching television or reading obsessively.  Episode after episode; book after book.  Anything to avoid dealing with the things on my to-do lists—the things of my life.

After wallowing in depression for a few weeks or a month, I drag myself out.  I force myself to be productive.  I move.  I work.  I get things done.  Slowly—so slowly—I climb from the depths of depression back onto the track of daily living.  I travel this path for a few months, then I fall again.

My depression is cyclic.  I know I will be depressed, but the times of depression are not themselves predictable.

Sometimes, however, there are hiccups in this cyclic process.  For example, illness can trigger depression for me.  At this stage of my life, productivity has taken a consuming, looming presence in my life.  There’s much to be done, and me to do it.  So, when I get sick, I become unproductive.  When I’m unproductive, my brain tricks itself into being depressed—after all, depression = unproductivity, therefore (logic assumes) unproductivity = depression.

I become sick.  Days pass by unproductively.  I feel depressed because I’m unproductive.  I feel worse because I’m sick.

I estimate that two or three of my depressive episodes each year are triggered this way.  I don’t start out by slipping into depression and unproductivity.  I start out unproductive and trick myself into depression.

Now, I’m trying to learn to trick myself out of it.  The past two weeks I’ve been struggling with illness, and thus with unproductivity and depression.  The reason I’ve been in bed is because of illness, but being in bed and watching the days slip by with so little getting done makes me depressed.  But being depressed keeps me in bed and ensures more days pass by with little getting done, even though my body is strong enough to start doing things again.

So, I do things.  I get things done.  I check things off.  And I try to feel undepressed.  Sometimes it feels like this strategy is working.  Then, I remember that I’m still doing things that should have been done last week.  And a little more time slips by.